Researchers at UNC Lineberger Comprehensive Cancer Center found that breast cancer patients surveyed about their knowledge of breast reconstruction were only moderately informed about the procedure, and their knowledge of complications was low. The study, published in the journal Annals of Surgery, surveyed 126 breast cancer patients planning to undergo mastectomy at the N.C. Cancer Hospital.

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"I really care about making the lives of cancer patients better,” said Dr. Clara Lee. "“I think a critical part of that is helping them to make good choices."

A study by University of North Carolina Lineberger Comprehensive Cancer Center researchers and collaborators has uncovered a need to better inform breast cancer patients about the pros and cons of breast reconstructive surgery among women undergoing mastectomy.

In a study published in the journal Annals of Surgery, researchers report that breast cancer patients surveyed about their knowledge of breast reconstruction were only moderately informed about the procedure, and their knowledge of complications was low.

“Breast reconstructive surgery can help a breast cancer survivor feel more whole and recover from the surgery,” said Clara Lee, MD, a UNC Lineberger member and an associate professor in the UNC School of Medicine Division of Plastic and Reconstructive Surgery.

Breast reconstructive surgery is one option for women who have had their breasts surgically removed through mastectomy. Rates of women choosing breast reconstruction after mastectomy have risen, with rates rising more than 24 percentage points to 36.4 percent in 2011 in early-stage breast cancer patients.[i]

But studies have also pointed to variation in reconstruction rates by race, issues of regret about the decision, and gaps in discussions between women and their providers about the procedure. One study found that as many as 47 percent of women surveyed reported regret about the decision.[ii]

Lee said they believe women should know about the risks as well as the benefits of breast reconstruction surgery whether or not they plan to have the surgery. Complications from breast reconstructive surgery can include issues with wound healing or infection, swelling, and flap or implant complications. And in some cases, complications can delay cancer treatment.

"Our general conclusion after this study is not that breast reconstruction is good or bad, but that patients don’t fully understand it, and we need ways to improve that."

“The decision about breast reconstruction is a type of medical decision that we call ‘preference sensitive,’ in that the best or right choice depends mostly on patient preference,” Lee said. “For these types of decisions, whether or not it was a good decision is whether or not the decision was informed, and whether or not the treatment matches what the patient prefers.”

In the study, the researchers surveyed 126 breast cancer patients planning to undergo mastectomy at the N.C. Cancer Hospital. They surveyed both women who planned to undergo reconstructive surgery after mastectomy, and also women who did not. Women were asked to answer general knowledge questions about reconstructive surgery as well as a question about complication risk.

Researchers found that the average knowledge score about breast reconstruction was 58.5 percent, which Lee said was only moderate knowledge. Seventy percent of participants got at least 50 percent of the questions correct.

“Patients should have at least a score of at least 50 percent, which means they know at least half of the important facts,” Lee said. “By that metric, patients did OK. But I do think that’s a pretty low bar for surgery that’s purely optional.”

Some patients completed the survey before seeing a plastic surgeon and some completed it after, and while the study found that overall knowledge among women who completed the survey before seeing a plastic surgeon was higher, it was not statistically significant.

Researchers considered knowledge of the risk of complications to be low, with 14.3 percent answering a question correctly about the risk of major complications.

The survey also found that most participants, at 92 percent, discussed breast reconstruction with their providers, but more women reported discussing the advantages -- at nearly 60 percent -- than those who also discussed the disadvantages, at 27.8 percent.

The researchers see a need for an intervention that could better help women making this decision.

“I really care about making the lives of cancer patients better,” Lee said.

“I think a critical part of that is helping them to make good choices. And the other motivation for me is that I have a very strong passion for fairness in surgery and in medicine. People who value treatment should get it, and people who don’t actually want it, or really are worried about complications for elective procedures, shouldn’t have it.”